Wednesday, November 25, 2015

The University presented a Family Day during the Film Festival. There were lots of events in which to participate, but the day was very rainy and it was crowded inside the building.

I wanted to take the kids especially for the instrument Petting Zoo--where kids could get up close and personal with different instruments and students that play them. Vivian tried almost every one, and got a sound out of everything she attempted except the trumpet. Elena didn't have as much luck; her mouth muscles and breath support are not as strong. She still enjoyed trying, and especially liked the cello.

Testing the Cello

Playing the Trombone!

Playing in the rain

A blog reader recently commented on what we do in rain, given Elena only has one pair of shoes, really. I found a pair of "overshoes" on amazon.com and they work beautifully in rain! There are several styles available, but the sizing is questionable. Elena wears a size 2.5 New Balance shoe, and the size overshoe we bought is a size "S/M". The overshoes are not high quality, and they are hard to get on/off but they do work well for our purposes. This has been the first time E could really stomp/splash in a puddle!

Her umbrella hat continues to be of good use also. The attachments on the head band are a little uncomfortable, so I think I"ll be making some changes by sewing on a sweatband of sorts.

Rain Ensemble

Another change of note: look at her crutch tips. These are called Flexy Foot crutch tips, and they are awesome! For some reason, Elena has been wearing through her regular crutch tips--about 3 pair per month. She's been growing, and I hadn't realized this wear and tear with her last pair of crutches, but it is what it is. These Flexy Foot crutch tips have lasted over a month, are still in great shape, and have helped ease her fatigue while getting around on crutches. They are expensive; I bought them for $35.00 per tip (they do have replaceable end caps, which I haven't had to buy yet) but right now, I think it's worth the cost.

Life has been good here. Girls are busy with school (Elena is working hard, and getting great grades!) and Vivian has her own activities--gymnastics and violin. I knew she was getting weary of "going to all Elena's appointments", so I've managed to carve out some time by picking the kids up from school and by fitting in a few activities for Viv during E's therapy time. It's a constant but rewarding juggle.

Here is what we've been up to in the last month!

Graves Mountain Lodge

We met up with Grandma and Grandpa at Graves Mountain. It's a beautiful place, nestled in a beautiful valley that's absolutely breathtaking during Fall Foliage season. We missed the dazzling colors by a week--but it was still fun.

With Grandma at the booths

Dad and his girls

Models after chase in the grass

Hay Maze was great fun!

The best parts were the apples and the Hay Maze--it was the first maze the kids have been in that we didn't have to be with them. Most parents (not me) could see over the bales well and find their kids if they were gone for too long. The maze was challenging, the kids loved it, and they both eventually escaped!

Vivian's 7th Birthday

Vivian chose "Interstellar Cinderella" as her birthday party theme this year. It's a space-age, tinkering, empowered-girl spin on a Cinderella story. Her friends had lots of dress up options--princess, fairy, with some space-steampunk accessories to jazz things up. (I spent a lot of time making the Space Goggles...a lot of time.) They were tasked to work together to make a robot, then program the robot (Jason in the designed robot "suit") to rescue cupcakes abducted by rogue space aliens in their spacecraft (cardboard spaceship outside). Then it was fort-making, running around playtime. Elena did a fantastic job as a guide--she really helped the younger kids work collectively without giving them too much instruction--a very mature role that she did very well.

Assembling the Dad-Bot

Spaceship on the move!

Vivian enjoyed her party. Her big present, now that she is SEVEN, was she got her ears pierced! She loves them. She did have to get one ear re-peirced, as she ripped out an earring (just ripped the post off, did not rip her earlobe) while taking off a bike helmet. The other big deal about being seven is she has a mouthful of loose teeth...I expect most of them to be out by the end of the year!

Halloween

Viv's party was actually celebrated on Halloween, so it ended up being a pretty busy day. After the party we put together the kids' costumes. Vivian wanted to be "regular" Cinderella (using a dress-up we had) and Elena originally wanted to be Inspector Gadget, but I didn't have the time to put that together. Instead, she chose a minion--which was great, b/c we put a pair of Space Goggles to good use!

E as Minion

Bubble Adventure

I had an idea of making huge bubbles for a long while now, but haven't been able to walk well enough to try it. Now that I can, we set out on a Big Bubble Experiment before the weather turned really cold. We set out at a nearby park, mixed our ingredients, and voila!

Photo credit: Elena

Photo credit: Vivian

It was a little too windy for making huge bubbles--they could have been the size of cars, but I couldn't close the bubble in time. My arms/hands were exhausted after making bubbles for over an hour (the wands are huge poles)...I'll have to make some changes next time to try to conserve energy and lighten the weight. The kid not chasing bubbles was the photographer--Elena really enjoyed it!

Tuesday, October 20, 2015

Every year we trek to Belvedere Plantation for the Fall Festival. We LOVE IT.

We made a few changes this year...we decided to meet up with our friends The Cs in the afternoon (we typically get there when they open in the morning) and try to stay until evening fireworks. We packed warm clothes, and expected tired kids after it was all over. We debated bringing E's wheelchair or our double stroller (it's really too small for the kids, but it can really help on tough terrain) and decided that walking was really the best way to get around. The plantation is so bumpy E's chair would have been a tough choice.

Sunflower picture! (it was too sunny for *someone*)

Jumper

Tractor Girls

Another change this year was we free-roamed. This wasn't a conscious decision until we arrived; the girls didn't want to go where we suggested, so we followed their lead. This resulted in more walking overall and less energy as the day continued--but everyone was having fun, so it didn't matter if we didn't do every activity we had initially anticipated.

Ropeswinger

Soft fall

Elena loved the Hay Barn. She loves to swing on the rope and navigate the deep hay, even though she needs a good amount of help. It was busy in there! Jason was a big helper in the Barn.

Bouncin' around

A surprise hit was the Corn Pit. It was new this year, and everyone--kids and grown ups--spent a lot of time in there! We brought lots of "surprise corn" home.

Corn Swim

Corn Spa Treatment (so says Vivian)

An unprecedented event, three out of four of us got picked as Pig Pals for the Pig races. We've tried in years past, but never got selected--and this year, three of us? That's right! Elena and Vivian's pigs did not win...but Jason's did, and he won a Pig Nose!

Go Blue Pig!

Vivian is just a little happy

The Winner!

Navigating the Pumpkin Patch is always difficult, the vines make for easy tripping. Elena only fell once! Everyone managed to find their perfect pumpkin.

Muscles

Happy faces

Family

Pumpkinas--Vivian on her toes here

As it turns out, it wasn't worth staying for fireworks. We got very cold and had to stay next to a fire to stay warm. Some of the attractions we were hoping to go visit later (zipline, etc.) were not lit, and we were too cold and tired to walk to the ones that were under night lights. The fireworks were pretty, but next time we'll opt for the earlier shift!

Since I have a lot to post, I'll make this short. We kicked off the apple season with our family friends, the Cs. The mountain orchard involves a lot of hilly walking, which is a challenge for Elena and myself. Everyone was pretty tired after picking (you have to walk a long way to get to the apples!).

Pre-pick

Viv found a good one!

Perfect Pick

Apple Girls

I thought we'd have too many apples, and have to make apple butter, applesauce, and apple muffins. WRONG. These kids ate them all before they had a chance to be cooked. We'll have to go back!

We had the chance to celebrate late summer with some friends at a local cidery. They have live folk music, and we enjoyed the early evening with a picnic dinner while the kids ran around the field (lots of other families were doing the same). We saw a child with what looked like a large leaf--and explored the nearby pond...which was full of giant lily pads!

Crazy on the dock

Lily Cape!

Lily Hat

Lily Umbrellas

Viv's Lily Nap

The kids loved them so much I let them bring the lily pads home and we kept them in the bathtub. They enjoyed bringing them to school to share!

Crabtree Falls
It was so beautiful outside, we tried to find a short hike. We drove through the mountains and found a short (but very steep!!) location. It had a trail, but sometimes you had to hike over serious rocks (harder for me than Elena). There were tons of stairs near the waterfall, but still very treacherous. We made it 2/3 of the way to the top, and decided that was enough.

Monday, September 21, 2015

Hooray for the first field trip of the year! Elena's school went to a nearby camp for a challenge course day. Her team and I tried to plan the best we could--but the camp would not give us specific information as to the day's schedule and terrain. Parents were asked specifically not to come as chaperones. Two days before the trip, I called the camp and tried to get my questions answered--they were not concerned about Elena's mobility. I have been to that camp. Their idea of accessibility is great, if you can walk. The terrain is steep everywhere, nothing is paved, and the "ramps" are either mulch, gravel, or woods, with scattered steps. The staff seemed to think I was worried about Elena handling the challenge elements; I was concerned about traveling to and in-between them--they are between 300 and 600 feet apart, through hills and woods. They assured me if Elena got tired or complained of pain they could put her in a wheelbarrow. I was not pleased. I told them to expect me at the field trip, which they were happy to oblige. E's teacher was happy I'd be there. I packed everything I could think of--wheelchair (although I figured we wouldn't be able to use it), foldable step stool for her to take sitting breaks, water, her adventure vest (in case she wanted to carry small things), and thought I'd offer piggyback rides if she preferred that over the wheelbarrow if she got tired (wasn't sure how that would go, given my bad knee, but I'd manage).

Thursday morning I went to leave to meet them at the camp...and couldn't find my keys. Couldn't find them--looked everywhere...and figured, well, I'll just have to get to the camp when I can. After a very long, emotional hour, I did find them. I finally arrived to meet up with E at the second station. The terrain is no joke--completely wheelchair inaccessible, and very challenging for a knee reconstruction patient.

Elena was fine. I put her neoprene pads on her crutch handles--helps cushion her palms, but they are too hot for everyday use. She liked that, but didn't want the stool or any other assistance. She was relieved I was there (she was expecting me), but was happy to tell me she did not need my help.

She didn't need me all day. I mean, I gave her a sip of water every now and then. But mostly I was available, but invisible and unnecessary--the best kind of field trip chaperone, right???

The students had lots of problem solving as a group for their challenges. They had to think things through as a team, and it was really awesome to see them succeed. All the challenges had a physical element, and Elena was not involved in carrying anything--but she seemed content to be a part of the team and had her ideas heard, she was not afraid of speaking up. She never fell, and even though she lagged behind walking between elements, I did not get the impression that she was left out.

Unfortunately the challenge elements weren't mapped out around the camp to minimize walking. This would have been really helpful for everyone, especially Elena. She was tired, and her group ate lunch last. Her group was also last on the biggest challenge, the climbing structure.

She went last in her group--which was fine, she got a nice sitting rest and ate a good lunch. I taped her hands (we learned she gets blisters very easily during her climbing study this summer, so I made sure to bring some) and made sure her harness and helmet fit (she's the smallest student). The climbing structure itself was too large for her--I knew she would need extra assistance on belay since she could not reach some of the climbing obstacles. The counselors told each group if they wanted to do the zipline (!) they would have to get to the top.

Climbing, determined and brave

ZIP!

There is a "catch rope" you have to drop near the end of the zip line. If you forget to drop it, the zipper would hit the rubber stop on the line (perfectly safe, but not as comfortable) and then each student was helped down by a ladder. I was worried that E would forget to drop the rope (she didn't), but just took a deep breath and decided she was more like her classmates than unlike them, and waited.

Look at that smile!

She walked back, the last zip liner, a triumphant look on her face! I was stunned she made it the whole day (I even left early). She really didn't need me (last year this would have NOT been successful). She did not complain of knee pain after school, despite being absolutely exhausted.

As many of you know, last year was a tough one for Elena. The knee pain issue was a huge one for her and our family. After seeing 4 different doctors (some several times), here is what I learned. Keep in mind, this information gathering took well over a year.

1. Elena had pretty bad knee pain. By "knee", I mean the area up/down/all encompassing her knee. Because of her high kneecaps (due to crouch gait--quads constantly pulling up on the patellas) sometimes it's hard for me to figure out if this is a muscle issue, connective tissue problem, or bone/alignment problem. My impression is the doctors didn't always know either.

We started with our main ortho, which assumed it was tendinitis. Elena got a new compression brace that was supposed to help retain her kneecap (a little; I don't think this really worked). It was hot to wear, but I think it alleviated pain mostly b/c it restricted her movement.

E complained of pain several times a week, ranging from pain level 2 to 7. I consider this extremely significant b/c I think she has a high threshold for pain, and decreased sensitivity due to her rhizotomy at age 4.

2. We finally figured out that her kneecaps were fractured. Same injury--most likely not from a fall, but from stress forces from crouch. Bones pulling apart, I imagine, is quite painful. I was angry an x-ray was not originally ordered (this was discovered during our third different ortho doctor visit). My impression is that this isn't terribly common, but it's not a huge surprise to doctors when this shows up on an x-ray. While it is upsetting...it's not worth fixing kneecaps unless you can help alleviate the cause of the fracture. Which means getting out of crouch.

3. NO DOCTORS AGREED. This was maddening. I am trying to make the best decision I can as a parent, but it's very stressful when you get conflicting recommendations from my best advisors.

So, here we are, nearly a year later. I have scheduled, then cancelled, two procedures for her. I finally got a consensus with the second ortho--which I initially felt good about his recommendation (tendon lengthening/knee capsule release) but I wanted to report why the other two procedures have been taken out for consideration.

Plan C: Ortho3 also discourages plan B. Recommends dual distal femoral osteotomies with patellar tendon shortening to bring down kneecaps. This plan involves much longer recovery (obviously). It is now springtime. PT introduces Therapy Exercise Program (TherEx), to work specific muscles to help postural strength. It's a lot of homework, but we do it. I am doubtful it will do more than keep the unsatisfactory status quo. E started seeing a massage therapist.

Plan D: Ortho1 changes mind and says yes something should be done to alleviate crouch. Recommends growth plate tethering in both legs (in essence, keeps the front of knees from growing while allowing the backs to grow--effectively "growing out of crouch". I worry about introducing a new bone deformity and look for someone to support this, as Ortho2 and Ortho3 do not).

It's been 2-3 months, and much to my surprise--Elena's crouch is lessening. I attribute this to the TherEx program, something I had close to zero confidence would do much of anything. Summer brings new challenges, more rest, more opportunities to stretch and move out of school. Elena's knee pain has lessened, her kneecaps are still high (I do not really expect this to change) but she is moving very well and hardly complains.

Last month we travel to Alfred I Dupont Nemours Children's Hospital, under a recommendation from our regular pediatrician (who doesn't know a lot about CP, but seems to know Elena better than her specialists). We see a developmental pediatrician and Ortho4. It's a lovely visit. Ortho4 disagrees with Plans C and D. He agreed with Ortho2 who said that the distal osteotomies wouldn't help her crouch, and there is a significant danger she would end up less mobile than now. He said that he has done several tethering procedures, and in his experience with CP kids like Elena, after a year (or so) when the plates are removed, there is a net zero gain--growth and spasticity don't mix well, and the tethering basically kept the crouch the same instead of getting worse after it was all over. He supported Plan B, almost identically (I didn't tell him what the other doctors had recommended). He was confident this would lessen her crouch, but also said there was no rush. He does recommend doing procedures to achieve her ideal posture before puberty, if possible, to try to establish good posture before her weight distributes differently (I definitely support this). He says her hips seem fine, and as long as she is not letting pain get in the way of her doing things, waiting is fine. He says if she has to opt out of things she would like to do because of pain or endurance, that is when surgery should be strongly considered. He said osteotomies would probably be a better choice if needed as an adult. (I can stress enough how wonderful the docs were at Dupont; they always spoke to Elena, the patient, first; it's obvious they specialize in children, and it's refreshing and wonderful--our visit there was fantastic.)

So. It's now almost Fall, and Elena is in 5th grade. Currently she is not complaining of pain and she is moving better than a year ago (amazing!). We are still doing TherEx (but have slacked a little), she wears Dynasplints at night on both legs (still doesn't make it through the night, ~4 hours is average), and we've brought the stander home from school to use at home (we'll end up using it on average 5x/week, for about 30+ minutes at a time) at Elena's request. Extracurricular activities are PT, and hopefully one class (gymnastics, yoga, robotics, or art are all being considered). I'm going to start taken weekly pictures/walking vids to see if I see her posture/gait significantly declines. If so, we'll look at doing something before middle school.

This has been a stressful, rough ride for the past year. I was freaked out I'd miss a window to help her. The biggest lessons I've learned are 1) take a deep breath, and try to be patient; 2) give your physical therapist TIME and opportunity; 3) information is power, even though experts may not agree; 4) slow down and try to enjoy the moment. Easy to reflect on that after a long time...hopefully I'll remember this next time!

Wednesday, September 2, 2015

Both girls were very excited for school to be back in session. Now that it's been a few weeks, I feel like I can give my back-to-school report.

Vivian loves school. She's very bright, I worry a bit of her being academically bored--but we'll handle that. No real concerns here.

Elena, on the other hand, needs attention. I am in regular contact with E's educators and principal, so we had worked out a plan for fifth grade. Of course, things got rearranged at the last minute. Overall it's good. Elena's fantastic fourth grade teacher ended up moving to fifth grade, and E was placed with her. I'm very happy about this. "Looping" is wonderful, provided it's a good fit, and it's a huge relief not to have to educate a new teacher about Elena's specific needs. The bad surprise was Elena doesn't have an aide.

You read that right.

Her regular classroom aide (she has had one every previous year) wasn't signed enough hours with E to keep her gainfully employed. At first, I was shocked. But...maybe I shouldn't be. Elena isn't the only child in the class who previously needed an aide, and those other students have learned to handle their specific issues on their own. I started to bristle, figuring that I was going to have to get all "IEP-legal" but that wasn't at all the case. If Elena needs an aide, they will make that happen. They are trying to determine if she really needs one.

And I started thinking, well, it sure would be great if she didn't. Let's try it.

So far, things are going very well. It helps that the fifth-grade classrooms are as central as they can be; Elena's walking demands are less than previous years. She is working on one-crutch walking so she can carry items (some issues there, like decreased speed and hip turning inward, so that might not work out very well for regular school activity). There isn't a full-time aide in her class, but there is someone assigned to help E at certain times of the day--on/off the bus (carrying), lunchroom (carrying/seating), and gym (still working this out). Elena is enjoying being as independent as she can, and wants to be like her peers (no hulking adult presence). Her teacher does notice her fatigue at the end of the day, so Elena's needs may change. Also, E is better than ever with vocalizing her needs (being tired and needing to sit down, get a drink, carry something, etc.) which is absolutely fantastic. She also has a new school PT who is offering some great seating solutions (dynamic seating, re-energizing strategies for mid/late school day) and E's now under watch of the school OT for her non-verbal learning disability/OT re-energizing techniques. It's really been great so far.

I've had three impromptu meetings with her IEP team/educators and they are a great group. Very attentive, quick to respond, offering new ideas and looking ahead to prepare us for middle school.

Well, after the beach, we rounded up All Things Summer. (Also, before the beach the kids went to Camp Holiday Trails--both of them (!) for a week of sleep-away camp (!). They had a great time (I knew they would), and I had more work done on my knee (mentioned briefly in the beach post).

Post-Beach "Camp"

The girls both went toCoderDojo; a free (!) electronic/computer camp for public schools. They *loved* it. I was a little nervous at first, b/c there were a lot of kids who have never been around a disabled peer, and parents (in general) did not stay with their children. I was worried Elena wouldn't get help if she needed it.

I was almost immediately approached by one of the women in charge, who started off greeting me with "I am so glad you are here!". She was overjoyed to see Elena there and told me not to worry about a thing. Turns out her son, 16 years old, also has CP. It was wonderful to have someone there who understood my concerns. The other kids were absolutely awesome, by the way.

The tasks were a little advanced for Vivian (conceptually difficult), but she enjoyed the arduino boards and the LED sewing projects. Elena liked everything-mixing music, Codu, 3-D printing (she tried to make a fan that she could use later with the arduino motor, which was admired by a lot of her peers), and she was able to complete a few sewing projects (needles can be very challenging for her-but she used needles AND pliers!).

Troubleshooting the arduino motor project

E making LED "wearables"

Vivian working the arduino LED project

Northern Virginia Trip(s)

Vivian wanted to go to the American Girl store to spend her hard-earned money; she has never been, and had been saving up all her pennies after she saw a catalog in the mail. She ended up buying a doll violin (she wants to take violin lessons). After that, we stopped by Clemyjontri Park, an awesome accessible playground.

Climbing around

Viv escaped the maze!

I especially liked the underground sound tunnels this time--we tried to play "telephone" all around the park. Vivian wasn't interested, but E, Grandma, Grandpa and I had a giggly time! If you are close to McLean, Virginia and have any interest in checking out an accessible playground--GO TO CLEMYJONTRI PARK. It's awesome.

"Telephone"

Cuties

Summer Harvests of all sorts

We took advantage of a great summer morning and took off to a peach orchard with some friends; we were the first ones out there, before it got too hot (and it got hot!). Lots of peaches were consumed, and lots more ended up in our freezer.

Peach picking with friends!

Someone ate a bad peach

Rounded up the last few berries of the season

We spent a good amount of time at the pool. Vivian passed her swim test (her own New Year's Goal!), and Elena has been working on her swimming also. She can make it half of the distance required for passing the swim test; she has a decent technique, but little endurance. We had another pool "close call" just a few days ago, when she really looked great stroke-wise, but when she got tired, her feet were not under her body (more of a diagonal) and she kept swallowing water at a depth where if standing properly she could touch the bottom of the pool. So, water awareness could use some work also--but Elena is certainly making good swimming progress.

Lots more is going on, (school, doctors, etc.) but that's for another post!

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.